swallowing difficulties

[Lucy O]

I don't often post messages on this forum, but thought that many of you are bound to have gone through this stage and so might have some wise words. My mother has had Vascular dementia and Alzheimers for 9 years (at least) and is very frail now. In the last few weeks I have noticed that her swallowing is getting really bad- she has been on thickened drinks and mashed foods for over a year, but on Friday couldn't get anything down without choking. It did improve a bit when I liquidised her food - but I could see that it was still a big effort. Can anyone tell me what the next step is - I fear that it will be feeding tubes, but I know that that will mean that in the future I will have to make a decision, presumably, to withdraw that tube. I have asked for a Speech Therapist to come and visit, but just wanted to know from normal people - rather than professionals - what the possibilities were and what might happen next.
Thank you for your help.

 

[Skye]

Hi Lucy

Sorry to hear that your mum is deteriorating like this. I'm afraid my husband is getting to that stage too.

You're right to ask for a speech therapist, that's the best person to help with swallowing.

Are you referring to peg tubes into the stomach? If so, the problem with them is that once inserted they cannot be withdrawn, as this is considered to be hastening death.

Difficulty with swallowing can lead to food getting into the lungs and causing infection -- aspiration pneumonia. If your mum is having serious difficulties and the speech therapist can't help, a peg will probably be suggested, and you should be thinking about whether or not this is what you want. There have been a few discussions on this subject on here, which you might like to read.

I hope the speech therapist can find a way to help your mum, and you can postpone the decision for a while.

Let us know how you get on.

Love,

 

[Amy]

Hiya Lucy,
We used to find certain soft foods made mum choke more than others - scrambled egg had her coughing and spluttering.
We were encouraged to stroke her throat to encourage the swallowing reflex.

If your mum is in advanced stages of dementia, think carefully about a peg: when dementia is well advanced it prolongs dying rather than gives life.
Only my opinion.

Love Helen

 

[Sandy]

Hi Lucy O,

Here is one recent thread on this topic:

http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=5958

You can find more like it by searching on "swallowing" using the Search function on the centre-right of the menu bar.

This is a very sensitive subject but there is a great deal of information out there and many people have been in this position and can sympathise with what you're going through.

Take care,

Sandy

 

[Lucy O]

Thank you

Thank you all for your advice - I knew this was probably the best place to come. Despite having had the disease so long and her body failing her, my mother's mind still seems to be not too bad - she may not be able to speak etc, but still smiles at me and calls me 'lovely' when I go in in the morning to get her up- and says 'NO!' when I'm trying to wash her! Therefore I would find it hard not to agree to a peg as she still seems to be 'there' inside. However, I am unwilling to prolong her suffering - I don't feel that she can be very happy - I guess this is the dilemma everyone faces. However, maybe I'm jumping the gun, as I've found in the past quite often I think she is getting a lot worse and then she rallies. I'll let you know what happens when the speech therapist comes to call!

 

[nickyd]

Hi, Lucy O..
So sorry for you and your Mum. It's awful when you have to make these decisions! We lost Mum 8wks ago this Saturday, we didn't have a choice of a peg, as Mum had declined so much after 2 bouts of Aspiral Pneumonia in a space of about 4 weeks. We nearly had to decide wether to stop her drip feed, but sadly she passed away, before we had to.. It is so cruel seeing your Mum suffer for so long with such a vile illness, and then to have to make a decision like that..
I'm sorry that I haven't been able to offer you much advice, but just wanted to let you know I'm thinking of you and your Mum.
Take care of Yourself and your Mum, give her lots of Love,
Nicky xxx

 

[Lucy O]

Thank you

Thank you everyone for your advice and suggestions of where to look re feeding tubes/pegs etc - I've found them really helpful and I feel a lot more informed as to what are the pros and cons, if and when I have to make decisions. I really appreciate your good wishes too, as you all know, you can feel very alone when you are looking after someone with dementia and it is great to know that there are caring people out there who understand what you are going through and have good advice too.
Thanks a million to you all. X

 

[rhallacroz]

Poor Swallowing

HI Lucy
This dreadful disease my dad too has vascualr dementia and i find the sad thing with it is that they sometimes they are so aware of their state which is dreadful. He too is finding swallowing difficult and spits out and just looks bewildered when he has food in his mouth. I am sure we are coming to the same position as yourself. What to do . I at this point would hate a peg feed for him as i feel it would just be prolonging the disease but it is so difficult for us to make that decision for someone else what does the professionals advice although i supose they too are in a difficult position.
I am thinking of you we are all in this together and its not nice lucy but we do seem to get the strength to carry on one day at a time. and like you said yesterday sometimes tomorrow is so different to yesterday that it is hard to believe its the same person.
Anyway take care and chin up. Tomorrow might be better